I Have Enough, Thanks

For the past eleven months (eight being constant) I have had severe hand pain in both hands. I always feel weird when doctors ask me how to rate the pain on a scale of one to ten, because my scale is totally jacked. Because of the VP shunt I have in my brain, pain is a little different for me. I’ve had dozens of fractures including my skull, collar bone, vertebrae, tailbone, arms, legs, breast bone – basically almost everything besides a hip or rib, and lots of surgeries – one that I was awake for. And yet my shunt is more painful than many of these put together. When it breaks, my central nervous system is actually overloaded and I am unable to speak or move because it puts my body in shock for the sake of self-preservation. But I’ve known this pain all my life, and my shunt is fairly active.

So for me “central nervous system overload” is between a nine and a ten. So my scale isn’t the norm. I kind of wish there was a universal one=paper cut, two=bee sting scale, because I say my hands fluctuate between a two and an eight and averages about a five. And a lot of doctors probably hear “five” and think that it sucks, but it’s more discomfort than pain. Um, this discomfort wakes me up in the middle of the night and makes it hard to fall asleep. It hurts!

Part of the issue is that no one knows what is causing my pain (I do!) and they don’t know what to do to treat it (I don’t either, otherwise I’d do it and stop my bitching). See, I’m fairly certain the issue with my hands is blood-related (circulatory issues), and I have my reasons. I have a bone marrow disorder, which makes my body produce too much blood. So I have to have regular phlebotomies and treatments to take care of this. Last year, there was a major uprising (sounds like the right word) at the Cancer Center I went to and most of the staff left, leaving them beyond short-staffed. Meaning that I couldn’t get in to do what I needed to do for weeks. As in six weeks after I was supposed to – three times, leading me to change centers altogether.

A common symptom of my blood disorder is severe hand and finger pain (basically pain in the extremities, but for me it does not affect my feet/toes). The first time I had my late-treatment the pain went away completely and immediately. The second time, most of the pain went away the next day. But by the third late treatment the pain didn’t go away at all – not even a little. And it hasn’t since. Now that I’m back on schedule at the new Cancer Center I go to, this doesn’t change. My hand pain is constant and treatments don’t make them better, and if I need a treatment it’s not worse.

Personally I think that the major schedule upset my body and now this is just a residual symptom it can’t shake. I believe it’s my bone marrow disorder or just my blood saying, “Bitch, I’m here to stay.” The hand pain began with this condition and was temporarily remedied by treating this condition. I’m a logical person – can anyone else see the logic here?

Adding to the fact that I have several blood mutations that make me prone to clotting, known blood clots in my arms etc. just reinforces that the issue is circulatory. Even if my hunch that I’m screwed and have to live with it because of last year’s mess, I cannot believe I am mistaken on the cause. I know my body. But for whatever reason my doctor, whom I adore and is awesome, doesn’t seem convinced. He’s always trying to chase something else to explain this symptom which blows my mind because it’s textbook for what I have, and what I’m being treated for. I mean I have an extensive medical resume from brittle bones to heart surgeries to the shunt I mentioned to kidney disease, an autoimmune disease and history of strokes, so when he goes off looking for something new I’m just like, “Um, I have enough. Thanks.”

I get frustrated that he isn’t paying attention to what I feel is obvious and logical. Why go see all of these other specialists and do all of these other tests to chase something that this isn’t? For the most part I’m okay humoring my doctor. I saw an orthopedic even though I knew that this was not my OI (brittle bone disease) acting up. I even let them take X-rays. But since everything was fine on that front (which I told them, repeatedly) now they’re thinking a neurological issue and think a nerve test is the next step. And I’m just thinking, “Okay, can I draw the line here, now?”

Because here is the thing – it’s not nerve damage. And I am 99.99998% sure of this, which is as sure as I ever get. Secondly, the issue of testing for nerve damage is problematic at best. I nearly lost my left arm after a surgery gone terribly wrong due to a bunch of blood clots (see, there’s that clotting/circulatory issue again) and had to endure several months of physical therapy. I regained most of my movement back, and the use for my arm and hand, when many thought it was impossible due to nerve damage… You see where I am going with this? As far as my left arm/hand – they are going to find nerve damage, but it is not connected to this recent development (the surgery/incident happened six years ago). I feel the need to remind them (the docs) that the pain is in BOTH hands, equally. This also would rule out any nerve damage in my arms or hands, it would have to be a nerve higher, like in my neck that affects both hands at the same time. But that is a serious reach. And why do I want them to shock the shit out of me (they send electrical currents to each nerve in a nerve test) just to prove what I already know. This isn’t that. (Let it also be known that typically a nerve test would indicate numbness or weakness in the extremities and also more likely legs/feet than hands. Let it also be known that I have no numbness, tingling or weakness in my hands. They just hurt.)

I’m trying to figure out how to be forceful, because firm and clear hasn’t worked, without being a complete bitch. Because again, I like my doctor. A lot. He has a great bedside manner, and is an expert in my condition. And he has the rare quality (that shouldn’t be rare, but often is) of not only seeing the small picture that is his specialty, but the big picture and how it’s all connected. He has given me great referrals for other specialists I have needed, he knows his stuff. I like him. I respect him. It just so happens, he is wrong, and I’m tired of seeking out some “mystery diagnosis” of something I don’t have, for something that is easily explained by something that I do.

It’s all incredibly frustrating because it’s not like I’m making a big deal out of a small one. This pain stops me from working, sometimes I cry out because of how bad it gets. It can be difficult to grasp things, not due to weakness but because of pain. It is causing me to be seriously sleep deprived.

And my kidneys don’t help anything. I’m also somewhat certain that drugs like Ibuprofen or Aleve would take a good edge off this pain, because it’s inflammatory pain. But because of my kidneys, I can’t take any anti-inflammatories. And what are they going to do, prescribe me a narcotic for the pain and aid with sleep? (Yes, a few of my doctors have already done this, but I just shred the script. I’m not taking something like that for this, particularly when this is chronic and I have no desire to become hooked on anything.)

I just wish I knew how to make my doctor see that I have enough stuff and don’t need to chase anything else. It would be one thing if his thoughts and theories were rational and supported by facts, but the opposite is true. I honestly feel like he’s just fooled himself into thinking it’s not blood-related because my treatments should have taken care of the symptoms and they don’t anymore. He wants to have a workable solution. And maybe there is one. But it won’t be found by blaming a phantom thing I don’t have.

The answer is right in front of him (one I’ve been vocal about); I just wish I knew how to make him see that.

-DMW

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